UK families in buyers club fly to Argentina for cystic fibrosis drugs

Six British people have travelled to Argentina to get supplies of two potentially life-saving medicines for cystic fibrosis that are unavailable at home because the National Health Service in England says they are too expensive.

Five need a medicine called Orkambi, the branded version of which has an official price of about £100,000 per year. There is no valid patent on the treatment in Argentina, however, so a company there sells a generic version for £24,000. The sixth person bought a similar treatment.

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But price talks between manufacturer Vertex and NHS England are in deadlock. So people with cystic fibrosis and their families have set up a “buyers club” to source the cheaper version.

Skype consultation

The families flew to Argentina last week to get a three-month or six-month course of the treatments. They had to have consultations by Skype with an Australian doctor who was the only medic willing to write prescriptions for this unusual set-up. However, their NHS doctors have agreed to monitor the patients during treatment, to check for side-effects.

“It’s a promising start but what’s vital is that we get access for everyone,” says Rob Long, who helps run the buyers club and was one of those who made the recent trip. Long says the UK should take other steps to provide the medicine. For instance, the NHS could begin a clinical trial, which could legally use the generic medicine.

Some families of people with cystic fibrosis are considering moving to Scotland, which has recently agreed to provide Orkambi through the NHS, despite the Scottish Medicines Consortium saying the price was too high.

In a statement, Vertex said: “Vertex and NHS England continue to meet regularly and our intensive discussions continue. We are unable to provide any further detailed information as both parties have agreed these discussions need to remain confidential.”

Similar buyers clubs have been created previously for people to access a treatment for hepatitis C – a liver infection that causes cancer – and a medicine called PrEP that stops people catching HIV during sex.